Re: our visit to oncologist

November 13, 2004

Jill,

My daughter has been through all those test before also. Her IGA was

elevated and her CBC shows different things depending on whether she's

having an episode at the time or not. She gets a CBC and a blood

culture for every episode. I would suggest doing the genetic testing

done for the known fever syndromes before doing too many more test just

to rule them out. They take awhile to get back so you might as well get

them started.

Good luck I know it's hard.

Tracey

mom to Maddie, age 5

& Brent, age 9

League City, TX

On Saturday, November 13, 2004, at 12:33 PM, Jill wrote:

>

> hi everyone! Britain had his appointment with the oncologist on the

> tuesday the 9th. He said he has heard of and also says that

> isn't a real answer. Some of the test we've already been through

> but he wanted to do them again so we could be sure or compare. He's

> the list of blood work we did: CBC (diff), blood smear, rituxan

> panel, HIV-1/HIV 2 AB, EIA, IGG Immunoglobulin, IGG subclasses, IGM

> immunoglobulin, IGA Immunoglobulin, Tetanus Antitoxoid AB, EBV AB

> panel, Titer (blood bank). What should be our next step after

> this? Has everyone else been through all these tests? Anyway we're

> getting out of the house today, so everyone have a healthy weekend!!

>

> Jill Berckefeldt

> mother of Britain

> age 2

> Mattoon, Illinois

>

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>

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November 13, 2004

Jill,

We have been through all these tests. All normal except IGE which indicates

he has allergies. We have since repeated all except HIV every 2 yrs... with

our most recent this past Feb. Same results including abnormal IGE. At the

same time (within a month) we did the genetic studies. We also did bone

marrow and spinal tap with viral loads tested while he was fevering about

105-107.

That is it... once all excluded the only PROBABLE not DEFINITE diagnosis is

usually .

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

our visit to oncologist

hi everyone! Britain had his appointment with the oncologist on the

tuesday the 9th. He said he has heard of and also says that

isn't a real answer. Some of the test we've already been through

but he wanted to do them again so we could be sure or compare. He's

the list of blood work we did: CBC (diff), blood smear, rituxan

panel, HIV-1/HIV 2 AB, EIA, IGG Immunoglobulin, IGG subclasses, IGM

immunoglobulin, IGA Immunoglobulin, Tetanus Antitoxoid AB, EBV AB

panel, Titer (blood bank). What should be our next step after

this? Has everyone else been through all these tests? Anyway we're

getting out of the house today, so everyone have a healthy weekend!!

Jill Berckefeldt

mother of Britain

age 2

Mattoon, Illinois

November 15, 2004

HI Jill,

Breana had all those tests done also in her first year. Her IGG (number 4

think) was very very low. We to had seen an oncologist that first year...she

was in the hospital and they were talking about bone marrow testing but it was

not down after the oncologist was brought in. I would highly recommend that the

testing you want done are the genetic fever disorders tests.

mom to breana finally 4!!!